National Lymphedema Network
 Lymph e-Channel vol. 6
January 2013  
In This Issue
· Welcome
· Therapist Article
· Patient Perspective
· New Product
· LE Treatment Act

Patients: We want to share  
your stories!


Don't forget to send us
a short paragraph of
your experiences with lymphedema and a picture for us to publish!

All submissions should go to robin@lymphnet.org.

Help Spread Awareness! 
 
The NLN is creating FREE Lymphedema Educational Kits for all patients at risk for lymphedema. Please help us raise money for the campaign by creating your own page and spreading the word. It only takes a minute!

NLN's Support Community
 
Looking to correspond with others who have lymphedema? Look no further than the NLN Lymphedema Support Community sponsored by inspire.com

Position Papers


Quick Links



Welcome to Lymph e-Channel   

 

Dear friends of the NLN,

 

We kick off the New Year with our first e-Channel of 2013. We have an ambitious schedule for the year ahead which includes expanding our reach to more patients affected by lymphedema. There are many underlying causes to lymphedema, and every patient has a different set of needs and concerns. This e-Channel focuses on bandaging and its challenges, including tips on utilizing bandage alternatives beyond the bedroom.

 

e-Channel is more focused, providing more practical guidelines for care as well as presenting day-to-day issues. These experiences, good, not so good, and sometimes frustrating, define what it means to live with lymphedema. Your stories Give Voice to our community. The stories are passed around in support groups, exchanges with your doctor and therapist, and the stranger on the street that asks what you have on your arm or leg. Many patients have little to no support, and we want them to know that there is a community for them - one that is more than willing to provide help and support. Please do not be shy and share your experiences, and show that, above all, life is just brilliant and even more fulfilling if you have to wear a garment every day.

 

Thank you to our new e-Channel editorial committee for volunteering their time and expertise.

 

The NLN staff is looking forward to a productive year for the lymphedema community nationwide, and we wish everyone a healthy and happy New Year!

 

Kind Regards,

 

Saskia R.J. Thiadens, RN & NLN staff 

 

A Day in the Life of a "Night Garment"   
By: Tracey Podolsky,  MPT,  CLT-LANA,  CLM

 

What is a "Night Garment"? When I first began treating lymphedema, I never used the terminology "Night Garment". I used to teach all patients how to remove the elastic compression garment that was worn during the day and then self bandage the limb at night before going to bed. Over the years, however, there has been a burst of alternative options to use in place of self-bandaging during Phase II of Complete Decongestive Therapy - Self-Care Management. I began referring to these garments as "Night Garments" because they are most commonly used at night during sleep.

 

Night garments can be described as alternative nonelastic compression garments that are made to replace bandaging in order to improve quality of life by making the process of compressing the limb at night easier and faster to apply. Over the years, I have been able to incorporate the use of so many of these night garments successfully in self-care management. I almost always recommend the option of using a night garment somewhere in the patient's self care regimen because I feel it does allow the patient to be more compliant.

 

What I have learned by using night garments is that you must be attentive to how many hours you are averaging in the night garments per night. When I see patients for follow up in self-care management and they are struggling, I ask them a plethora of questions to figure out why their self-care regimen isn't working for them.

 

Compliance to wearing the night garment every night is only one of the questions that should be asked during a self-care management follow up appointment with your lymphedema therapist. The most important question is how many hours are you averaging each night in the night garment? The reason why this question is so important is because some patients only sleep 3-4 hours a night.   If a night garment is mistakenly understood as a garment to be worn only when you are sleeping, the effected limb may not be getting as many quality hours in the night garment as it should be.

 

This simple but extremely important question has solved issues that arise in self- care management much quicker. I make a conscious effort to educate my patients about how many hours of use are recommended for any of their compression garments when I am teaching them how to independently manage their swelling. I typically recommend that my patients shoot for 12 hours in the night garment which gives them less than 12 hours in the daytime elastic compression, given that you will be showering or cleansing the skin in between. This may vary per patient depending on the lifestyle, assistance needed, severity of lymphedema, and willingness to comply.  

 

Some patients must use night garments 24 hours/day. Some other patients may only use the night garments when they need a break from self-bandaging for a night.   Others may use the night garment during the day to add to the number of hours in a night garment within a 24-hour period. Regardless, it is important to ask your lymphedema therapist how long they recommend you use the night garment because success in self-care management could depend on it.

 

Because different patients perceive the use of the term "Night Garment" differently, I have changed my terminology with patients from "Night Garment" to "Alternative Compression Garment" or "Nonelastic Compression Garment". This doesn't cause any confusion or misunderstanding when instructing a patient when or how to use the garment.

 

 


How Bandage Alternatives Made My Lymphedema More Manageable   

by Robin Miller, Design and Development Coordinator, NLN

 

 

For the newly diagnosed, the daily requirements for self LE care can be a lot to take in. I was first diagnosed with LE when I was 22, and the thought of having to wear a sleeve daily was too much for me to bear. My therapist kindly tried to ease me into a routine by starting me off just wearing a sleeve and gauntlet during the day and nothing at night. Soon I realized that in order to keep my arm under control I would need to wear compression at night too.

 

The first time my therapist bandaged my arm I cried. I didn't think I'd ever get used to it or be able to bandage it on my own. While I knew that this was a necessary step, I had a very hard time actually doing it. It would take me over 30 minutes every day to bandage, and I would usually end up removing the bandaging from my arm sometime during the night. I had a difficult time getting the compression gradient correct and that would often cause my hand to go numb. My failed bandage attempts made me feel defeated, and I started losing interest in being compliant.

 

After seeing me struggle, my therapist introduced me to the wonderful world of bandage alternatives. We looked at all of the options and picked one that we both thought I would like. With my new bandage alternative my "bandaging" time was reduced from 30 minutes to 5 immediately! I only needed to bandage my fingers and slide my arm into my custom made, comfy garment. After many years of practice I can roll finger bandages, do my skin care, bandage my fingers and secure my bandage alternative garment in about 2 minutes or less. That is something I always have time for!

 

Also, I have found that I don't mind my arm being "bandaged" anymore and am much more willing to keep it on. If I'm having a lazy day around the house or am just feeling a little extra swollen, I keep my garment on all day. I can still type and do my work with it on and feel like I am being extra good about my care. Sometimes my therapists (all of whom are good friends after all of these years) and I joke about my early "non-compliant days" of treatment. They can't say that about me any more!  

 

LymphaPodŽ Pneumatic Compression  
by Lympha Press USA

 

 

 

Therapist review: Leslyn Keith, MS, OTR/L, CLT-LANA

Central Coast Lymphedema Therapy

San Louis Obispo, CA

 

I find the LymphaPodŽ pneumatic compression therapysystem an effective treatment option for bariatric and larger sized patients who need treatment of the abdomen, genitals and buttocks as well as the legs. It is particularly beneficial for those patients with less mobility, who have difficulty donning and doffing other compression garments.

I have had good success with the LymphaPod. It's been highly effective for softening fibrotic tissue and making edema easier to evacuate. The appliance fits the bariatric-sized patient better because of its design, and addresses edema in the trunk, and especially the dependent edema in the pannus. My patient is motivated to use it regularly because of how well it works. I consider it to be an essential part of my bariatric patient's home program. He would not be able to manage his lymphedema without it."

 

 

Patient review: L. Kelley, lymphedema patient

Ripon, CA

 

After using the LymphaPod, I feel lighter and can move around better. It really helps reduce my edema, particularly in my abdomen. I don't feel as stuck in one place and it makes it easier for me to walk. I get from a sitting to a standing position more easily. I feel less heaviness and pressure which makes it easier for me to sleep. After using the LymphaPod my body doesn't hurt as much; using it gives me hope. I look forward to using it each time, and it has changed my life. 

 

Contact Lympha Press USA www.lympha-press.com, toll free 888-596-7421 for information.

 

 

 

 

 

 

Lymphedema Treatment Act Update

 

As we enter this new cycle of Congress I am pleased to share with you this important information regarding the Lymphedema Treatment Act.

 

We are glad that the majority of our cosponsors have returned to office this year. Although cosponsors do not carry over from one Congress to the next, members typically sign back on to bills they cosponsored previously. Once our bill is reintroduced in the 113th Congress it will be imperative that you contact your members of Congress again.

 

In the mean time, you can use our "smart" Action Alert to thank your Representative if they cosponsored the Act during the 112th Congress, or express your disappointment if they did not. Either way you will be laying the groundwork for this cycle of Congress by asking that they cosponsor as soon as the bill is reintroduced. (Click HERE to send your letter now.)

 

Be aware that bills also do not carry over from one Congress to the next. All bills that have not been passed into law must be reintroduced in the subsequent Congress. In the process, they receive a new bill number. We are saddened that our original bill sponsor, Congressman Larry Kissell, was not reelected, but we are very excited that Congressman Dave Reichert (WA-8) will be the sponsor of our bill in the 113th Congress.

 

A wonderful team of patient advocates in WA State secured Reichert's sponsorship. Inspired by their success, we have begun building similar teams in every state in order to gain maximum support for the Act. If you are interested in working with other advocates in your state please email us at info@LymphedemaTreatmentAct.org.

 

We made considerably more progress in the 112th Congress than the 111th, and with your help we'll go even further during the 113th Congress. Our grass roots advocacy depends on the involvement of people just like you!

 

To receive the most up to date information on the bill status and the other simple ways you can help, please subscribe to the Lymphedema Treatment Act e-Newsletter. Then, please use our easy Tell-A-Friend form to get others involved.

 

The federal legislative process is long and tedious, and can feel frustratingly slow at times, but those who succeed do so because they have the will to endure the process. With your help, we will persevere as long as it takes and we will succeed! 

 

Heather Ferguson

Founder and Executive Director, Lymphedema Advocacy Group

www.LymphedemaTreatmentAct.org

info@LymphedemaTreatmentAct.org

National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
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